An Episcopal (Anglican) Chaplain in the Saint Luke's Health System of Kansas City, reflecting on work and faith and life. NOTA BENE: my opinions are my own and do not represent the Episcopal Church or the Saint Luke's Health System.

Monday, December 12, 2011

"I Read About This Case...."

Just how valuable is anecdotal evidence? In my world, “anecdotal evidence” refers to the individual interesting story. In a world that is shaped – or at least believes it is shaped – by research, anecdotal evidence is interesting, but not all that valuable. They are almost always interesting, but usually too exceptional to be useful.

Unless, that is, it’s brought up by an anxious family member. In that case, it is a moment to grasp at slim hope; and in that case, the story almost always begins something like, “I read about this one case….”

So, it caught my attention when this AP story showed up in my paper. While they are not the whole content of the story, it is built around two exceptional young women. They share the distinction of each having weighed less than ten ounces, and having lived to tell about it (so to speak). They have had remarkably few ongoing health problems. They are perhaps as exceptional a pair as we might find in any set of health statistics.

And the article does note that. Early on the reporter notes,

A medical report from the doctor who resuscitated the infants at a suburban Chicago hospital is both a success story and a cautionary tale. These two are the exceptions and their remarkable health years later should not raise false hope: Most babies this small do poorly and many do not survive even with advanced medical care.

It would be more true to say, “most do not survive with advanced medical care.” The article notes the research of a physician who tracks data on this, and says that, “about 7,500 U.S. babies are born each year weighing less than 1 pound, and that about 10 percent survive.” Which is to say, of course, that 90 percent die, even with all the medical technology that we can bring to bear.

The article notes that this is especially important in trying to determine at what point a fetus is viable. This is an important consideration in two hot questions in medical ethics. The first is when it is or is not appropriate to treat. That is, what is the point after which all the medical technology might benefit this new child, and before which it won’t – and so arguably isn’t worth putting this new child through. All the medical technology is scarce and expensive; and while there is resistance to the idea of rationing that care, it’s a reasonable question whether there are circumstances in which it would be wasteful.

The second hot question is abortion. In efforts to regulate abortion, and especially after the first trimester, many states have sought to identify some point of “viability,” some point in gestational development after which most fetuses (and in application any individual fetus) will probably survive, and so should have some measure of legal personhood – enough at least for the state to defend.

The difficult thing is that these cases don’t really help us know about viability. Yes, they have survived, and indeed have thrived; and, like other anecdotal evidence, they are too exceptional to be really useful.

That doesn’t mean, though, that these stories won’t come up. Such stories always come up. It is at that point when physicians and other health professionals need to step beyond simple statistics. It is at that point when they have to become more specific and discuss why this case – this person, this fetus, this patient – is more likely to be on the 90 percent and not in the 10 percent. That’s not an easy task. It almost always involves telling people something they don’t want to hear, something that emotionally they may not be able to hear.

At the same time, it’s what we have to do (and I say “we” advisedly; because helping hear what they’ve been told is also part of what a chaplain might be called to do). It’s all we can do. Our best information and our best medical guidance is all we can offer in response to this opening: “I read about this one case….”